Wednesday 2 August 2023

"I have only ever thought about diabetes complications once in my lifetime. That was up until this week."

To be really transparent with you, I have only ever thought about diabetes complications once in my lifetime. That one time was when I was age 10 or 11, in the midst of my rebellion phase (sorry Mum and Dad) and my consultant was trying to get through to me and asked me what I saw in my future. 

That was up until this week, which made the second time that I thought about diabetes complications. The second time was when a letter came through the post to tell me that I have background retinopathy. My first diabetes complication.

So here I am, 25 year old me, 21 diabetic years down the line with my first diabetes complication. I knew this would inevitably happen as time went on, but I did not expect it to affect me whilst I was in my 20's.

Picture this, you do your absolute best to look after your health, to be told after 21 years that you have your first diabetes complication. People with diabetes are invited to have their eyes screened every 12 months to check for diabetic retinopathy. Rapid changes in blood glucose levels cause the eyes to contract and expand more rapidly than usual, which over time, causes damage to the blood vessels. Background retinopathy is a a term to describe small bulges (microaneurysms) that appear in the blood vessels in the back of the eye(s) (retina), which leak small amounts of blood. And unfortunately, it is now a term that describes the small bulges in my blood vessels, in the back of my eyes which are leaking small amounts of blood.

There is much to be grateful for, which I can say now that I feel more level-headed. It is stage 1 at present, which means that it is very common and can be reversed over time. However, it does put me at an increased risk of vision problems.

This diagnosis comes just a mere few months after being told that I have a pre-diabetic HBA1C. This is a blood test which measures your average blood glucose over a 3 month period. This is something that I could have never dreamed of and I have felt an immense sense of pride and confidence since that appointment.

When I opened the results from my latest eye screening, I immediately felt a strong sense of guilt, quickly followed by shame and anxiety. My mind then went to the worst extreme, and I thought about what treatment for retinopathy looks like and how scared I felt about potentially losing my vision. It's funny how our brains are hard-wired in this way. I am over the shock of it now, and the more logical part of my brain has taken over -thankfully(!!). The only thing I can do (and that is sort of in my control) is to continue to manage my blood glucose levels to the best of my ability, which is becoming much more realistic with new technological advances (my closed loop- more on this later).

As previously mentioned, I have only ever thought about diabetes complications once in my lifetime. And yes, I think now is a good time to acknowledge that I am acutely aware of the privilege in that statement. That one time was when I was age 10 or 11, in the midst of my rebellion phase (sorry Mum and Dad) and my consultant was trying to get through to me and asked me what I saw in my future. I told him the answer I thought he wanted to hear.. a house, a husband, babies and cats. He gently (and incredibly skilfully) navigated a discussion around how those things might not be possible if I carried on down the self destructive path that I had carved out for myself. I can't recall if it was that discussion that pulled me out of that phase or something else entirely.

I continue to gain comfort in situations that have a high chance of inevitability. That peace of knowing that well, you did everything you could have done and I know that I will continue to do everything I can do until that is no longer working. And when that is no longer working, I will explore every other avenue. So here is to embracing the clarity of inevitability and the comfort and privilege of a fairly steady 21 years.

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